Monday, December 16, 2013

Love/Hate

I never meant to take a month-long break from this space. Life--and the holidays--just sort of took over. I've been busy baking and decorating sugar cookies with Quinn, making waffles at his preschool's breakfast-with-Santa event (where the waffle makers kept shorting the fuses in the fellowship hall and the line for waffles kept getting longer and some of the waffles we sent out may have been undercooked), and I don't even know what else. Last-minute shopping? Getting our Christmas cards out the door? Complaining about how cold my feet are whenever it drops below 65 here? Hiking Camelback with Chris?

It's a good kind of busy, and it has been nice not to give as much attention to cancer over the past few weeks. Well, my own cancer anyway. Which brings me to something I've been thinking about quite a bit lately.

I have a love/hate relationship with social media.

On the one hand, it brings my attention to stories like this, which renew my faith that I will be okay. I will live to see Quinn graduate from high school. Because even when you think there are no options left, there are mad (aka brilliant) scientists and billionaires working on flies to come up with tailored options for treating cancer. This is one of the coolest things I've read this year. I don't usually read Esquire. I probably wouldn't have seen this story but for social media.

I also love the community of it, because sometimes you need to have a 2 a.m. conversation with other people who are also suffering from steroid-induced insomnia and hot flashes, even if you've never met each other in person. On Monday nights, I try to participate in a chat on Twitter that uses the hashtag #bcsm, for "breast cancer social media." It's typically around the same time I'm trying to get dinner on the table and Quinn cleaned up and ready for bed, so I don't always participate so much as hang out on the sidelines or read the transcripts after the fact. I don't know the numbers, but a lot of people--from survivors to caregivers to practitioners--join these chats, which are moderated by a couple of survivors and a breast surgeon. It is a way to connect with others who know exactly what you're going through. One week, I commented that it was like showing up at the bar in Cheers, where everyone knows your name (or at least your side effects).

The topics of these Tweetchats change weekly. In November (and of course I'm late to the game on this--typical), the focus one week was "the invisible scars" of breast cancer. Women mentioned all kinds of things, from infertility to poor body image to trouble with intimacy to the lasting effects of chemobrain. For me, the answer was all of these things, yes, but far and away fear has always been the most obvious and lasting of my scars from this disease. Fear of more mets, fear of progression, fear of leaving my family too soon. Talking about these fears helps release their grip. Talking about them with people who are also experiencing them as intensely as I am reminds me that maybe I'm not completely crazy.

On the other hand, social media can be a scary place for me. Scrolling through my Facebook feed as we boarded our flight home from visiting my dad over Thanksgiving, I learned that a friend had died right after the holiday. Breast cancer took her from her two daughters, ages 8 and 11, who will now not have their mom around for Christmas or for when they start middle school or learn to drive or any of those other wonderfully ordinary events every parent and child should get to share. I saw the news just after I had buckled Quinn in to his seat next to mine, and I didn't even try to stop my tears.

Between sobs, I told Chris I was done with Facebook, that I couldn't take it anymore.

A couple of weeks earlier, I'd learned (via Facebook messaging) that another friend's cancer had spread to her brain, where most chemo can't travel because of the blood/brain barrier. She would need what's called whole brain radiation, which is probably about as fun as it sounds. And last week, another friend got the same news, just weeks after absorbing the shock that cancer was in her liver. As the rest of us race around marking items off our Christmas lists and hurrying to get cards out on time, these women are rushing to meet with specialists to come up with new treatment plans, in order to stop breast cancer in its tracks, in order to--we hope--spend more Christmases with their loved ones.

Facebook and Twitter aren't always the most personal communication tools, but they're how many of us with cancer share our news to friends far and wide. They provide an easy delivery system, and can bring forth huge bastions of support. Most people who read this blog link to it from Facebook.

With every loss, though, every piece of shitty news, I swear off social media for awhile. Bad news stirs up so many fears for me that it can be immobilizing. Coming across an errant status update before bed can leave me up worrying half the night. I haven't mastered the art of shutting off my emotions, of removing myself from the disease enough to just listen and advocate. Not yet.

I have also struggled over the past few weeks with how to enjoy the relief I feel over my clean scan at the same time as the grief I feel about my friends who aren't doing as well. I've been so lucky. I have consistently responded to treatment. I thank my lucky stars every day for that. For now, at least, I am not leaving this family.

Like it or not, I am part of this online community, this cancer community that brings bad (and good) news, often in quick succession. Another friend recently posted that a spot on her liver is benign. Someone else that the tumors in her brain are dying; treatment is working. For stories like these (and the cute kids on Santa Claus' lap you guys keep posting), I am usually back to my social media feeds within 24 hours. Because don't shoot the messenger, right? Facebook isn't the problem. Cancer is.

2 comments:

I know exactly what you mean about this love/hate relationship with social media. Mostly, I feel fortunate to be part of this online community and though cancer does bring bad and good news, and often as you said, in quick succession, I'm still grateful every day to be able to share so openly with others who get it. Love your last three sentences. Enjoy your holidays.

Welcome

Writing about my journey at the intersection of metastatic breast cancer and motherhood. Diagnosed with Stage 4 cancer at age 32 and when my son was just five months old, this is the story of how I've learned to take life one day at a time -- through treatment, potty training, and, eventually, recovery.